Endometriosis

by William H. Parker, M.D. and Ingrid A. Rodi, M.D.
Edited excerpts from our book
A Gynecologist's Second Opinion

Endometriosis is one of the most common gynecological conditions in the United States. We don't know exactly how many American women suffer from this disease, but best estimates set the number at about 5 million. Women of all ages, races and backgrounds have been found to have endometriosis. Recent information suggests that the disease is becoming more prevalent. Some 2 million women had hysterectomies for pelvic pain related to endometriosis between 1965 and 1984. Over that time period, the number of hysterectomies performed per year for this condition doubled. In addition, the proportion of all hysterectomies performed because of endometriosis rose from approximately 10% to 20%.

Endometriosis can also effect fertility, and about 30% of infertile women are found to have endometriosis. The symptoms and problems related to endometriosis lead to the hospitalization of a substantial number of women every year.

WHAT IS ENDOMETRIOSIS?

The tissue that lines the uterus and is shed during the menstrual period is called the endometrium. In some women, this same tissue can be found growing outside of the uterus, where it does not belong. When this occurs, endometriosis is said to be present. The tissue that normally lines the uterus may be found in or on the ovaries, the fallopian tubes, the outer surface of the uterus or other areas of the peritoneum ( the membrane that lines the abdominal cavity and surrounds the internal organs). Occasionally, endometriosis may be found on the bowel or bladder. And very rarely, it has been found in locations far from the pelvis, such as in an old abdominal scar or even the lungs.

The lining cells of the uterus normally go through cyclic changes in response to the varying levels of the female hormones estrogen and progesterone produced by the ovary throughout the month. During the menstrual cycle, as estrogen levels rise, the tissue first grows and builds up, and then, as the level of both estrogen and progesterone fall at the end of the cycle, the tissue breaks down and is shed as menstrual blood. When a woman has endometriosis, while the lining cells are present in locations where they are not intended to be, they still respond to hormonal changes in much the same way as if they were still within the uterus.

During the menstrual period, as normal uterine lining cells begin to bleed, the endometrial cells present outside the intestine - endometriosis - also begins to bleed. The blood from these endometrial cells, however, is contained inside the body and accumulates. This accumulation of blood and other substances given off by the endometriosis often causes irritation, and even damage, to the surrounding areas. And, if these cells are present near the uterus, bladder or the bowel, the irritation may lead to pain in those locations. The body's natural response to irritation and injury often ends with the formation of scar tissue, which also increases the likelihood that discomfort will be experienced (see chapter on pelvic pain). The scar tissue can also interfere with the passage of the egg into the tube and lead to infertity. Thus, the abnormal location of uterine lining cells leads to the symptoms and problems that we associate with the condition called endometriosis.

WHAT DOES ENDOMETRIOSIS LOOK LIKE?

The appearance of endometriosis is variable and changes over time. Areas of endometriosis may be small, only a millimeter, or larger than a few centimeters. We think that new endometriosis appears as small, almost clear, raised areas on the surface of the uterus, tubes, ovaries or inside lining of the abdomen. Over time, these areas, called implants, continue to collect the pigment contained in the blood they secrete. As this occurs the areas become pink, then dark red, and finally a dark brown color. The darker areas have often been called "powder burns" because of their color and shape. In order to evaluate a woman for the presence of endometriosis, a careful inspection of the entire pelvis and abdomen must be performed, looking for all the possible apearances of endometriosis, some of which are fairly subtle (see fig 6.1).

WHAT ARE THE SYMPTOMS OF ENDOMETRIOSIS?

If you have painful periods, chronic pelvic pain, pain during or after sex, premenstrual backache, painful bowel movements, the sudden onset of pelvic pain, or a problem with fertility, your doctor will consider endometriosis as one of the possible causes for your problem. On the other hand, many women with endometriosis have no symptoms at all, and the condition may be discovered inadvertently during surgery for another reason.

CAN ENDOMETRIOSIS CAUSE INFERTILITY?

Infertility has long been felt to be associated with endometriosis, but the reason endometriosis might cause difficulty getting pregnant has not been established. In fact, it may be that the cause of the endometriosis may also independently cause infertility. We know that about 5% of women who have had children and request tubal sterilization will be noted to have areas of old endometriosis at the time of their surgery. Therefore, the presence of endometriosis does not, per se, imply that a woman can not get pregnant.

However, it does appear that the chance of getting pregnant is decreased somewhat if you have endometriosis, and the more endometriosis you have, the less likely you are to get pregnant. Endometriosis appears to start as small areas of abnormally situated endometrial lining cells. As the tissue grows and bleeds, scar tissue forms around it, increasing the amount of damaged tissue. The scar tissue may even grow around the tubes and ovaries in a way that blocks the passage of the egg down the tube.

The probability of a healthy woman getting pregnant is about 25% per month. For women with mild endometriosis, where the endometriosis is present in small amounts and has not caused any scarring, the pregnancy rate is about 7% per month. For women who have severe endometriosis, where extensive scarring, blockage of the fallopian tubes, and large cysts in the ovaries are present, it is not hard to understand why pregnancy rates are extremely low without treatment.

HOW CAN ENDOMETRIOSIS BE DIAGNOSED?

Endometriosis may be suspected if tender, thickened areas are felt near the uterus on a pelvic examination. If an ovarian cyst is present, sometimes a sonogram may exhibit the patterns suggestive of an endometrioma, and the diagnosis may then be suspected. Unfortunately, we do not have any test presently available that can reliably predict whether or not endometriosis is present. Neither sonography, MRI, CT scan or blood tests are accurate in this regard.

The diagnosis of endometriosis can only be confirmed by looking at the pelvic organs at the time of surgery. Areas with the characteristic appearance of endometriosis can then be seen. Usually a minor surgical procedure, called laparoscopy, is performed under general anesthesia for this purpose. A small lighted instrument is inserted through the navel, and the surgeon looks through the instrument directly or, with the aid of a camera attached to the laparoscope, the pelvis can be projected on a TV screen.

At times, the diagnosis of endometriosis is made during a laparotomy, abdominal surgery which is performed under either general or regional (such as epidural) anesthesia. The incision in the abdomen ranges from approximately two to five inches in length. This abdominal surgery may be needed when a large endometrioma has been identified by the sonogram or if a pelvic mass of uncertain cause is found on examination. In addition, endometriosis may be incidentally found during an abdominal surgery performed for another reason, such as fibroids, an ovarian cyst or even surgery for appendicitis.

TREATMENT

Treatment is aimed at reducing the symptoms of endometriosis, usually either pain or infertility. Treatment is divided into three paths - observation, medication, or surgery.

OBSERVATION: IS ANY TREATMENT NEEDED FOR ENDOMETRIOSIS?

Women who have minimal or mild endometriosis and do not have pain may not require any treatment other than careful follow-up. In practice, however, if the diagnosis of endometriosis is made during laparoscopy, most gynecologists will burn or cut away these cells. However, a few studies have demonstrated that this treatment of mild endometriosis does not enhance fertility. For women with mild endometriosis, fertility rates are good even if no treatment is performed.

CAN MEDICATION BE USED TO TREAT ENDOMETRIOSIS?

It is known that estrogen causes endometriosis to grow. Endometriosis is extremely rare before a young woman begins to produce estrogen and starts to have periods and the disease usually disappears after menopause, when estrogen production stops. Therefore, one goal of treatment with medication is to lower, or stop, the production of estrogen. Reducing the levels of estrogen "starves" the endometriosis and causes it to shrink and sometimes even disappear. Two classes of drugs have been developed which lower the amount of estrogen in a woman's body - Danocrine and GnRH agonist (see details in our book). Progesterone can also be used to treat endometriosis.

WHAT IS CONSERVATIVE SURGERY?

Conservative surgical treatment is considered when a woman needs surgery for pain or infertility associated with endometriosis, and she desires to preserve her pelvic organs. The goal of this approach is to remove as much endometriosis and scar tissue as possible and restore the uterus, tubes, and ovaries to their normal positions. Conserative surgery can be performed using laparoscopic surgery or an abdominal incision. Newer modalities involving laparoscopic surgical techniques and use of instruments such as lasers have allowed for surgery to be performed through very small incisions with the benefit of a shorter hospital stay and quicker recovery time.

However, laparoscopic surgery requires special training, expertise, and experience on the part of the surgeon. Conservative surgery may provide a cure, but it may also provide only temporary relief of symptoms. A woman may elect to have conservative surgery in order to complete her family, and then, at a later time, she may elect to undergoing radical surgery. And, some women may require more than one conservative surgical procedure before they need to have, or are willing to consider, a more extensive operation. Yet, for some women, multiple conservative operations may provide relief of symptoms.

If a patient undergoes a conservative surgical procedure for infertility, her chance of getting pregnant is related to the amount of endometriosis found at surgery. Women who have mild endometriosis have about an 80-90% chance of becoming pregnant within 5 years whether they have the endometriosis removed surgically or not. Women who had moderate endometriosis treated surgically have about a 60% chance, and women with severe disease have about a 35% chance of getting pregnant.

The following questions and answers can be found in our book

ABOUT ENDOMETRIOSIS

WHAT IS ENDOMETRIOSIS?

WHAT DOES ENDOMETRIOSIS LOOK LIKE?

WHAT IS AN ENDOMETRIOMA?

CAUSES OF ENDOMETRIOSIS

WHAT CAUSES ENDOMETRIOSIS?

WHAT IS RETROGRADE MENSTRUATION?

CAN ENDOMETRIOSIS BE CAUSED BY ABNORMALITIES OF THE UTERUS?

WHAT DOES YOUR IMMUNE SYSTEM HAVE TO DO WITH ENDOMETRIOSIS?

IS ENDOMETRIOSIS AN INHERITABLE DISEASE?

CAN ENDOMETRIOSIS SPREAD THROUGH THE BLOOD STREAM OR LYMPH SYSTEM?

SYMPTOMS OF ENDOMETRIOSIS

WHAT ARE THE SYMPTOMS OF ENDOMETRIOSIS?

CAN ENDOMETRIOSIS CAUSE PAIN WITH YOUR PERIOD?

CAN ENDOMETRIOSIS LEAD TO ADHESIONS (SCAR TISSUE)?

CAN ENDOMETRIOSIS CAUSE PAIN WITH SEX (dyspareunia)?

CAN ENDOMETRIOSIS CAUSE BACKACHE?

CAN ENDOMETRIOSIS CAUSE PAINFUL BOWEL MOVEMENTS?

CAN ENDOMETRIOSIS CAUSE PAINFUL URINATION?

CAN ENDOMETRIOSIS CAUSE CHRONIC PELVIC PAIN?

CAN ENDOMETRIOSIS CAUSE SUDDEN PELVIC PAIN?

CAN ENDOMETRIOSIS CAUSE IRREGULAR MENSTRUAL PERIODS?

CAN ENDOMETRIOSIS CAUSE INFERTILITY?

CAN ENDOMETRIOSIS CAUSE A MISCARRIAGE?

CAN ENDOMETRIOSIS LEAD TO MOOD CHANGES OR DEPRESSION?

DIAGNOSIS OF ENDOMETRIOSIS

HOW CAN ENDOMETRIOSIS BE DIAGNOSED?

WHAT IS THE ENDOMETRIOSIS CLASSIFICATION SYSTEM?

TREATMENT

OBSERVATION: IS ANY TREATMENT NEEDED FOR ENDOMETRIOSIS?

CAN MEDICATION BE USED TO TREAT ENDOMETRIOSIS?

WHAT IS DANOCRINE?

WHAT ARE GnRH AGONIST MEDICATIONS?

WHAT IS "ADD-BACK THERAPY"?

CAN PROGESTERONE BE USED TO TREAT ENDOMETRIOSIS?

CAN BIRTH CONTROL PILLS BE USED TO TREAT ENDOMETRIOSIS?

CAN PREGNANCY CURE ENDOMETRIOSIS?

CAN SURGERY BE USED TO TREAT ENDOMETRIOSIS?

WHAT IS CONSERVATIVE SURGERY?

WHAT IS RADICAL SURGERY?

CAN ENDOMETRIOSIS COME BACK AFTER TREATMENT?

WHAT HAPPENS TO ENDOMETRIOSIS AFTER THE MENOPAUSE?

CAN HOLISTIC TREATMENTS BE USED TO TREAT ENDOMETRIOSIS?

WHAT KIND OF RESEARCH IS BEING DONE ON ENDOMETRIOSIS?

ARE THERE ANY PLACES WHERE YOU CAN GET HELP IF YOU HAVE ENDOMETRIOSIS?

Disclaimer: The ideas, procedures and suggestions contained on this web site are not intended as a substitute for consulting with your physician. All matters regarding your health require medical supervision.